How our lives have been touched by preeclampsia, cerebral palsy, epilepsy, feeding tubes, failure to thrive and whatever else comes our way

Monday, April 19, 2010

This Little Piggy

Anna has been doing well since her dilation. The first night we did not tube feed her. The second night the girls spent the night with my MIL so I did not up the feeds that night just in case Vesuvius erupted. I did not feel like that was fair to my MIL who graciously keeps my kids for a night almost every weekend to give us a break. Saturday night was going to be the big night- the night where we determined if this procedure was a success. During the night Anna woke up and said "I code" so I just stumbled over to her bed and put another blanket on her and went right back to sleep. A little while later her pump beeped that it was finished and Kenneth went to flush her button and found her lying in a bed full of tube feeding. No wonder the kid was cold. Anyway, that attempt was an obvious fail. She woke up yesterday morning and ate a whole banana. That is remarkable for 2 reasons. 1. She hates bananas and 2. She never eats a "whole" anything. Then she wanted a snack, then she pigged out at lunch, then had another snack, then pigged out at dinner and then passed out in the recliner. Kenneth called me at work to excitedly tell me, "I can't keep this kid full today." I was off work today so I was hoping to get to see it the miracle for myself. She ate half a piece of toast for breakfast- better than usual but not too impressive. I took her to daycare and they said she ate about normal for them. When I picked her up from daycare the first words out of her mouth were "I eat." I cooked homemade chicken noodle soup for dinner and she ate 3 bowls of it. They were little bowls but still, it was 3 of them!!!! Then she had some pretzels before bed. I am debating about whether or not to even tube feed her tonight because her belly is so full and pooched out. I am thinking we have done a really good thing here. I have not cancelled the surgery just yet but for the first time in 2 years and 5 months we are not having to force feed our child and she has not puked. It is an amazing feeling! I pray this will continue. I now even have hope that someday tube feedings will be a thing of the past! She is sleeping better, too! She has fallen asleep twice without her medicine and slept in on Sunday until 10:30!!!!! I had to wake her up this morning and that never happens, she is always waking me up. Dr. Ogunmola- you are the man!!

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The Cuties

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this....When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss. But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.